First of all, a word of appreciation for all of you who make this forum what it is: I visit it most days and have benefitted from the support and the knowledge. Thank you.

It's that knowledge that I'm hoping to tap into with my current question.

I often see people here referring to low carbohydrate diets.

I've been reading about possible links between carbs, insulin, diabetes and - a particular personal concern of mine - dementia, particularly the theories that cognitive decline can be affected by glucose levels and slowed down with very low carb diets.

The difficulty with such reading is that the internet is full of people with loud voices and books / merchandise / web traffic to promote. I'm not a scientist and am aware that what might look like a credible argument, with footnotes and citations to studies and links to other references, could be either cutting edge and promising or just nonsense.

I'd be grateful for people's views on the subject generally and suggestions as to where to learn more.

My own GCA PMR story is that I was diagnosed with both this February aged 58 and put on 60mg Prednisilone. (UK, NHS) I'd tapered down to 12.5mg by May and was generally feeling good and going about life as though I had nothing wrong with me so, unsurprisingly, the pain and the exhaustion have returned and I am now back on 24mg.

You know what I'm going to say - and it's not scientific, just common sense - too fast a reduction. So when you feel okay again, take it more slowly this time around. Your GCA is going to be with you for some time yet - mine lasted 5.5years - and although you may be luckier with being male, it's usually around 4 years!

Most talk about low carbs is to stop you putting on extra weight with the Pred, but really I would say stick to a healthy diet, cutting down on refined carbs.

I remember my hubby's dietician (he was diabetic) saying - there's no such thing as a "diabetic diet" or any other so-called illness diet - there's just a good diet and a bad diet! Full stop.

As you say, most are aimed at selling something, so best to look at NHS or BHF site - one that's not got a vested interest in sales.

As I said on an post recently, portion control is the main thing - we are all liable to eat more than we actually need.

Both of whom are still plugging the low fat and carbs are good story. The science behind the low carb story is good. Unlike the science behind the low fat story - which was based on a flawed study picked up by the sugar lobby and they put in so much backing it flew. It suited them - using the likes of high fructose corn syrup to make low fat food palatable has made them millions, billions of dollars over the years. If you are honest and unbiased, the only tracking factors have been how obesity has followed the increase in carbohydrate content of the western diet. And how populations that have switched to the western diet have become obese where they were not on their traditional diets.

Sorry ma’am. Yes okay, get the point, but they are not plugging their own products such as supplements etc which is what I was trying to get across!

Must do better!

Don’t pick on me had a slightly frustrating day in hospital today - pre op assessment which took ages and then sent for another X-ray because previous one was “out of date”.

Trouble is, times coincideded with every man and his wife wanting one as well, so wait (for me) was 45 mins! Until I whittered, and surprise, surprise got bumped up the list! Plus it was market day, so traffic horrendous. Moan over!

Neither is Steve Parker - just his books but you can get it all from the website if you are patient!

I hate that - couldn't they have a fast-track for the pre-op people? And surely they will do one or an MRI immediately pre-op?

As for Market Day - always a good reason not to go anywhere! Especially our hospital because the world and children come in to get bloods done at the clinic and then to visit anyone in hospital as well as doing the market. Mind you - we did and OH got a cheap pair of summer trousers so can't really complain as our market is quite small.

Actually should have been a fortnight ago, but was cancelled (well there’s a surprise) so Market Day or not, I wasn’t missing this one!

Don’t know why the holiday-makers or the locals flock to market, it’s nothing special! Not like the old days when Market Day was the one time the farmers got into town with their goodies, and caught up on the gossip!

On Lake Garda they have lists up for which village has market each day. For most people that is to help them decide what to do that day - and it is mainly "nip into the market". For us it is "How can we avoid that village...". You queue in the traffic jam to get in, you queue to get out. And there is barely room to walk - and worst of all, the cafes put their prices up!

Do you have a putative date or is this the pre-pre-op? Esca had to go back for blood tests the day before.

My experience was that when I started pred, only 15 mg, my blood sugar soared to pre-diabetic levels. I promptly eliminated nearly all grain based foods and sugar from my diet. Also heeded my dietitian daughter's advice to always have a source of protein whenever I did eat carbs. Blood sugar went down to a reasonable level, but did not return to what my doctor called "normal normal normal" until my pred dose was in low single digits. I'd say the low carb diet certainly has worked for me.

This was my experience also. And rather than simply eat a "balanced" diet and hope for the best, I wanted to know just what pred was actually doing to my blood sugar. So I went out and picked up a glucose monitor and started testing my blood sugar like a diabetic would. The exercise was very revealing. I found that the only foods that didn't spike my blood sugars into dangerous levels was severely restrictive low carb foods. I also observed that prednisone tends to affect the blood sugar the most during mid-day and late afternoon. Later in the evening, I get better glucose readings.

Depends on the person. There was a diabetic guy on the patient.info forum whose worst spikes happened overnight. And he could abort the spikes by exercising at a specific time relative to meals - but it was a while ago and I can't remember what worked for him.

Yes, I think it is individually different for every person. You had pointed to a comment by a diabetic who described his experience with pred as having a "bell curve". It might be the same comment. Based on the glucose testing I've done to monitor my reaction to different foods, I definitely see a bell curve pattern. But I don't test as regularly as a diabetic person would, and one of those new-fangled continuous monitors would provide a better picture of what is really going on.

I remember eating at a McDonalds and ordering a Big Mac prepared without the bun and wrapped in lettuce. Then I also ordered a Sausage McMuffin, figuring that one small English Muffin wouldn't be too much of a problem especially when combined with all the meat and cheese that was included along with that little bit of bread. I was surprised that it sent my blood sugar up to 190 after 2 hours. Ultimately, as I tested various foods, I ended up essentially eating what corresponds with what they are calling the Ketogenic Diet. Advocates of the Ketogenic Diet recommend that the total carbs for the day be limited to 20 grams per day.

I hadn't planned to follow anything other than a low glycemic diet, and actually went into ketosis without realizing it. I was experiencing dizziness and lightheadedness. I actually went to see my doctor, who pulled me completely off my blood pressure medication because I had lost a lot of weight and was being over medicated. Turns out, when you go low carb you need to be careful about how it may intersect with any medications. It also requires additional intake of fluids and electrolytes. I ultimately decided to follow the advice of the Keto diet experts who know how to best make the adaptation to fueling on fat rather than carbs.

The main mistake people make when doing low carb is to think that and that they can eat fruit ad lib. An medium sized apple contains about 18g of carbohydrate, and orange 15g or so. A banana may have as much as 25g of carbohydrate. Several people on the forum in the past have said "I'm eating low carb but not losing/still gaining weight". On being asked for details they were eating a couple of pieces of fruit a day. Low carb means less than about 50g carb per day absolute maximum if you want to lose weight. An apple and a banana or a small handful of grapes gets you almost there without adding any vegetables (even salad leaves have a bit of carb) or other low carb foods. Personally I don't lose weight until I get down to about 20g per day which is low and requires a bit of discipline at first.

shows you relative carb amounts in fruits. There is some carbohydrate in many foods and while each on its own doesn't have a lot it all adds up. A single slice of bread has 12g carbs and could send your BS level up by up to 50 points depending on the type of bread, what you ate with it and your body. Once you get to a certain limit - which varies from person to person - you won't lose weight. How much you can eat will depend on what you want to do.

A healthier diet has far less carbs than the "normal" US diet these days which contains maybe 300-400g of carbs, about half of them from the wheat products they eat alone. But if you want to lose weight or keep BS levels down you have to go lower, sometimes much lower. Once you reach the weight you want to be at you start to add a small amount of carb to your diet until you stop losing weight. Start to eat too much carb and you will start to regain the weight you lost. A "diet" to lose weight or avoid diabetes problems isn't a short-course - it is a change in eating habits that if for life.

The dietdoctor site in general is very good and simply explained. This is where the explanation starts:

Thanks! Already went to that site per response below. It is a great site and love the visuals. I’m going to use it for my daughter with Down Syndrome. I hope I don’t loose weight, but I do think the sugar is keeping my BP high & I don’t want Type 2 so you’re right, I must religiously follow the eating plan. Dr. Assem’s plan is so very different from Dr. Esselstyn’s Whole Foods Plant Based. That’s why I’ve been so confused. I loved where Dr. Essem says “Olive oil should be a drug” (one of the good ones) as he pours it all over his food.

I did read something in the past few weeks about dementia and diabetes but my brain can't recall it and I deleted my search history first thing this morning. I suspect it was a lean science bit in a newspaper but I lurk around diabetes UK website so it could have been there. If it comes to mind I will message you.

Yes it's seems so. Basically insulin resistance in the brain. There seems to be an ongoing debate still and the research referenced above is based on people with existing mild cognitive impairment. I can't get access to the full article so dont know full criteria.

This is the journal article that was referred to in what I was reading. Unfortunately you have to pay unless you have a subscription.

I always try to track down who the authors and if they work at a medical or university based research project (which may be funded or done with a charity or national organisation)* I prefer peer refereed journals that send research articles to others in the research field to examine the theory behind the research, the methods used, ethical issues, the conclusions and recommendations. Usually such journals are accessible on subscription as an individual or your local library might offer institutional access. Sometimes the articles may be quite dense in terms of vocabulary so you have to be patient with yourself.

*Organisations that are not trying to sell something or would offer skewed analysis. For example, cigarette companies funded research but only published results that said smoking was safe. Often big pharma funds research on new drugs or supplements. You just have to be aware- which your questions show you are.

Thank you, Poopadoop. That looks like it would be worth reading although I confess my brain can't do much with "The dementia conversion rate was 57.4% in T2D patients vs. 42.6% in non-diabetic subjects (p = 0.02). T2D and APOE ε4 allele were independent risk factors for developing dementia."!

Thank you all for your replies. My interest has been sparked by a close family member of around my age having been discovered to have brain changes indicating a dementia condition.

That relative has done what we might all do and dove into the internet and therein found literature which basically argues that, in some people, long term elevated insulin levels caused by love of cake and biscuits can create conditions where parts of the become 'starved of energy'.

It uses the phrase I've since read elsewhere that dementia might be considered as a type III diabetes.

The argument goes on to suggest that very low carb diets can help the body convert body fat into glucose and also that it can cause the body to produce ketones which the brain can use as an alternative energy source.

There's lots of this that makes me sceptical but I can understand the desire to try anything that might help.

I’ve just caught up with this post having had problems with accessing the App yesterday, so some of what I say has probably already been said/ referenced in articles etc - so apologies to anyone I repeat and you may already have had good advice from the site experts. Also apologies if this is a bit long, but I’ve tried to keep it simple for our pred brains.

Basically, the body & brain work best when the supply of blood to all areas is good and the acid:alkaline (pH) balance is optimum. With diabetes, unless the blood sugars are well controlled, the small blood vessels become damaged and the body becomes more acidic. Both of these factors reduce the oxygen supply to the brain and other parts of the body and cause cells to become damaged & malfunction. This is more likely to be a contributory factor in vascular dementia, rather than in other types such as Alzheimer’s or Lewey body dementia. It’s all about achieving a consistent balance and trying to avoid peaks and troughs in blood sugar levels. Hence advice about eating protein with carbs and sticking to whole grains which are absorbed more slowly, rather than processed carbs.

Exercise, which of course is not straightforward for many of us, is also really important , as it gets the blood moving to all areas of the body getting nutrients & oxygen to where they need to go and helping to regulate blood sugar levels & cholesterol. The body is like a sensitive set of scales. Too much or too little of anything can tip it out of balance. When we’re young it is very good at compensating, but as we age it finds it much more difficult, so finding and maintaining the right balance becomes even more important or we get sick and small changes in our well being can tip us over very quickly. With many of the conditions we see in older age, such as Type ll diabetes, heart & vascular disease and dementia the damage and changes which happen start to occur many years before the symptoms become apparent, because basically the body has compensated for the abuse it has received. Then of course there are genetic factors, but that is a whole different ball-game......

Hope I haven’t bored/ bamboozled you and this is a teeny bit helpful. The good news is, it’s rarely too late to make helpful changes and moderation is the key to everything ( she says, reminding herself that 2 large glasses of wine last night was probably 1 too many!).

What I’m going to say is a bit profound, but I’ve been up since 5am with Pred sweats, so the brain has been whirling.

There’s an amazing amount of pseudoscience out there and sorting the wheat from the chaff and the downright crazy is a nightmare. For all of us seeking answers and solutions to our health problems much of it provides us with hope. Hope that we have found something that will get us through and over our ills quicker and more easily. Unfortunately, there are an awful lot of people out there who have got very rich and massaged their egos on ours and others dreams. But on the plus side, there are also people around (including on this forum) who are knowledgeable through training, experience or both and have our best interests at heart. They can ease our journey and probably save us money too!

Someone (a professional) once gave me a very good piece of advice - “it’s taken years for you get to where you are, don’t expect to change it overnight. It takes hard work, consistency and commitment”. Tough words, but very true. They were actually talking about muscle memory, but I think you can apply it to so many things in life, especially chronic illnesses.

Now, how many times have i said, “if only I could turn back the clock........”, or “if I knew then what I know now...”. But I probably wouldn’t have had nearly as much fun along the way 😜, or would I.......?

Off to get on with my day now and going to try not to use up too many spoons!!!

is autoimmune, as is PMR and dozens of others. Well known cardiac tv dr oz finally admitted dr davis was right all along, and he dr oz was wrong. However if its dementia you are most interested in, another one of dr Oz's four favourites is neurologist Dr Perlmutter (GRAIN BRAIN), who called alzheimers diabetes 3, he became famous for innovative approach to parkinsons in 1990s. His father a brain surgeon died of alzheimers so he had a personal interest too in preventative healthcare for brains. Both are very famous by now, and I found both their books at my local library here in london, but for 2 week mealplans and recipes for a beginner I recommend perlmutter's books more (with the assistance of his favourite italian restaurant) , all prepared quickly using normal ingredients, just avoidance of the worst foods and focusing on the heros, to achieve "exquisite control of blood sugar". However for those with serious cardiac and diabesity issues, I would stick with dr davis, its not just low carb but a very low carb diet, devised with his own patients in mind, to reverse their symptons, note that neither doctor would accept gluten free flours, they use seeds and nuts, so if you cant ditch bakery, then dr davis is best, he has all the recipes for baking (eg flaxseed bread), but expect to spend more time in the kitchen! But one final word of caution, you must consider your drugs too, as some foods are contraindicated with pred, or other drugs you are taking.

Dear Sweet Kate-for a Newbie you sure are knowledgable on all things diet. Your link for the 2 hour European Conference was Fabulous! I was fascinated. I am thrilled you are on this site. I ordered one book before I watched and just had to get Dr. Assem’s book after, as he’s just perfect!

You might want to give your friend Kate Gilbert’s book - it helped me so much, however I was a latecomer and clueless on flares so I expect much less pain for your friend.

Tapering is confusing, but after PMR Pro explained to me it is a 30 day thing it helped. You just mark your calendar & then fill up a 30 day container thing following the calendar. Good Luck to you both.

Dear Brizzleben: I am not an expert. I have had diagnosed GCA and PMR for about 4.5 years after 7 months of being undiagnosed. With Prednisone I have developed the highest level of "pre-diabetes." Some type 2 diabetes is caused by the resistance of the cell walls to letting the insulin breach the cell wall so that the glucose can "climb up" the insulin ladder and get into the cell. When we are very sick, it's hard to exercise. But I found that (and my family doctor recommended) walking helps an immediate high glucose reading. Doctor said that 45 minutes of walking would help especially after eating. Well, I have a glucose monitor. It seems to me that my glucose level goes up 60 points after I take the Prednisone. This takes about 6 hours. After that a 30 minute brisk walk immediately takes it down to 100--normal. On another note: My friend does not take Pred. and does not have GCA or PMR, but has a pre-diabetes problem. Her dietitian advised her to do 1 hr. of exercise a day. Viola. It seems that regular resistance training and (for me) Yoga helps keep the glucose steadier even if I eat a few carbs. That said almost all carbs raise my blood sugar way too much, and the rise persists into the first thing in the morning glucose reading. But with the hour of daily exercise I can eat a few carbs--no wheat, or other grains, almost no fruit except for maybe berries when I have exercised regularly, and maybe a small amount of whole fat yogurt. (After a while our immunity gets low and especially when we take antibiotics the tendency is for fungus to overtake bacteria and give us a fungal infection. So attempting to get a balanced gut is necessary, Yuck!) Also beans can be a problem. They are somewhat high in something that translates into a higher glucose reading. This is not a diabetic diet per se. (Some diabetes specialists espouse eating a lot of beans and other foods which fill the belly causing you to eat less, get thinner, and lower the correlation between high weight, belly fat and diabetes.) But in a rigid attempt to counteract the tendency of the Pred. to raise my blood glucose I really try to eat very, very few carbs. It is not fun. And of course life being what it is, and maybe the body needing carbs, I cheat sometimes. But I am now at the lowest measurement of pre-diabetes down from the highest. Everybody on here has read a book by one of our members, Katie, (I think). She survived PMR but is now a type 2 diabetic. AND when you are very sick you can't even easily get out of bed and stay up, much less do resistance training or yoga for an hour! I might actually be coming to the end of my GCA. It's supposed to go into remission. So I have more energy now, than most of us. And my PMR has never been as horrible as has the PMR of many people on this site. But the above method has worked for me. Good luck,

PS You can now make "rice" with a product made up entirely of cauliflower. I find it helps if you have a dish which make some kind of liquid, or "sauce."

Thank you for responding, Brizzleben. Ask PMRPro, the expert. In the past I believe that she has said that the Prednisone causes the liver to take its stored glycogen (sugar) and release it into the blood stream. This is why Prednisone tends to raise blood glucose levels. Most Web searches name Type II Diabetes as a potential side effect of Prednisone. I have decided (but I am not an expert) that the exercise (especially aerobic) causes the cells to want the glucose in the blood stream and, therefore, they "let the glucose in." They stop resisting it. The weight training or yoga then maybe makes more muscle and the muscle needs calories to exist and in general tends to feed on the blood glucose more easily than non-muscle fibers. For me the actual weight training does lower my glucose reading somewhat. But it seems to stabilize my glucose levels generally, as opposed to just right after the exercise.

I’ve no idea what my blood sugar levels are doing. They were tested when I last had a check up as part of my GCA follow up but I heard no more. I don’t need the lose weight so, I’ll fess up, my main concern is the theory that a low carb diet can slow down brain deterioration. Hence my interest in evaluating the credibility of the claims that the prevalence of some kinds of dementia may be connected with hi carb diets. From what you’re saying, along with many others here, is that exercise is equally important.

Anything more strenuous than walking has seemed impossible recently but I forgot to take my predniselone yesterday morning and took it at about 10.00pm and today I took my normal dose at about 10.00 this morning. And suddenly....boing! Feeling a lot perkier. Will not be deceived though and will be sensible!